Diagnosis Complete: Now what? Parent Grief

by | Last updated Jan 25, 2021

Reading Time: 4 minutes


This ‘now what’ question is one that is often missed by the clinical folks out there in ‘therapy land.’ We do encourage families to pursue an evaluation when they have concerns. We generally say that any fears of getting a ‘label’ will be assuaged by the many benefits that a ‘label’ can provide. For example:

  • Knowing how to help your kiddo at home
  • Having a document to take to the doctor for services
  • Having critical information to take to the school for services
  • Getting the ‘lingo’ down so that those in ‘therapy land’ can understand where to start 

Therapy Land?

Why do I say ‘therapy land’? Well, this is not like Disneyland. It is not Never-never Land either. It is a place where most families find themselves lost in a sea of services. Families often feel like a little tugboat in a turbulent storm as they try to understand ‘what’s next’ for their child.

It is well documented that families go through a unique emotional journey after diagnosis. 

Relief: The most immediate and common theme is that of relief! Parents say, “Well, now I know what it is so I know what I can do! I just want to help my child however I can to live her best possible life.’ They feel a big sigh of relief as they realize that what they knew for some time was challenging and different, has a name. It has a name and some prescribed programs that can help.

Bargaining: As with the well-known grief models, many parents have a strong inclination to wish and hope that there is something they can do to make this diagnosis either not there or make it quickly go away.

Disorientation: There is a well-known parent who wrote a piece about the experience of adjusting your expectations for your child’s future and for your own as a parent. The parent described how it was like planning a trip to Hawaii. You have packed and planned for your trip. You board the plane and then you discover you landed in Paris. It’s a new language, a new culture, and an unexpected turn of events. It’s not necessarily an unwelcome event, just a different one.

Anger: There are two common anger themes that families experience. One is toward all the people who did not warn them. There’s anger at the pediatrician, the school, family members, neighbors, and friends. Parents often feel they have been asking for years and no one told them. 

Why are parents SO mad? This anger is totally understandable, and it’s the very reason that we started this company. Parents shouldn’t have to journey down this road alone with no advice or direction. It pains me to no end to hear this literally almost every time I talk to a family, “I asked my pediatrician, my school, and my friends who are therapists, and no one told me.” Parents might add that they implored people to help, even begged them to help, and no one did. No one wanted to say the ‘A’ (autism) word or the ‘D’ word (disability). In our line of work, we generally find that these terms are not to be feared. They can be so very important to getting access to much needed services in the community and at school. 

More anger: The other kind of anger we hear often is with the schools. There are concerns that the school could have done something. That the professionals could have alerted them to a child’s needs and challenges. There can be denial of services, resistance to help, discipline that is inappropriate given a child’s needs, teachers that don’t understand, teachers that made it worse, and more. Of the articles I have read on this, I can say this is a two-fold challenge.

1) Yes, many schools do make massive missteps and in that case, you will have to advocate to get help for your child. 

2) All the research points to the fact that you want to work to forgive these missteps and be a collaborative partner with the school as soon as humanly possible. The best way to move forward in my experience is to focus every conversation on ‘student success.’ That is what we are all here to do. We are all good and caring people who are here to help this child. The sooner we can work together, the better things can go.

Denial & Conflict: Just like with any other grief process, parents often find themselves saying, “I can’t believe it.” Sometimes, this is due to the shock and surprise that this is happening in their family. Sometimes, they are uncertain that the diagnosis fits their child well. Other times, it could be that parents are worried that a diagnosis will change their child. There can be family conflict that arises when one parent really embraces the diagnosis and wants to move forward with the services, and the other parent is more hesitant to accept the diagnosis or anything that follows.

So, what does all this mean for you, if you are or have been grieving a diagnosis?

The parental grief process is COMPLETELY NORMAL. You are not alone. 

If you need it, seek support for yourself. Some parents initiate mental health services for a period to work through these challenges. Maybe some marital therapy is needed to help your family adapt to this ‘new normal’ and create some structures at home. Maybe it’s just that you and your spouse need a little more time spent together without the kids to talk this all through and support each other. Many families find that an ABA parent consultation can be helpful to sort out these challenging days in your home. 

Taken together, please know that WE GET IT. This is hard. We can also offer you this…your child, regardless of age, thanks you for this journey. They probably won’t tell you, but they tell us all the time. Please know that as rocky as this path is, you are doing right by your child, forging ahead as an advocate and a supporter. Your work really matters.

And in all things, you rock. You’ve got this. We’re here for you. 

Dr. Marcy Willard

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